Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2012, 25, 372382

Stress among Mothers of Children with

Intellectual Disabilities in Urban India: Role of
Gender and Maternal Coping
Aesha John
Department of History, Philosophy, and Social Sciences, Pittsburg State University, Pittsburg, KS, USA

Accepted for publication

23 November 2011

Background The study assessed stress among mothers of

young children with intellectual disabilities in urban
India and examined the extent to which child functioning and maternal coping predict maternal stress.
Through qualitative analyses, the study identified negative and positive dimensions of Indian mothers caregiving experiences.
Materials and Methods Mothers completed Parenting
Stress Index-Short Form, and childrens teachers completed Vineland-II teacher rating form. Maternal
responses to a semi-structured interview were rated to
assess maternal coping and content analysed to derive
qualitative themes.
Results Three-fourths of the sample obtained a clinically
significant stress score, and maternal coping emerged as

Introduction
The sociocultural perspective points to the importance
of cross-culturally examining family processes such as
stress and adaptation among parents of children with
intellectual disabilities (see Skinner & Weisner 2007; for
a review). According to this perspective, parents construction of their daily experiences takes into account
the ecocultural niche, which is made up of elements such
as the disability policy, culturally prescribed gender
roles, availability of intervention services and social constructions of disability (Gallimore et al. 1989; Skinner &
Weisner 2007). Findings from a number of studies validate this notion of culturally grounded parental experiences. For example, among mothers of children with
intellectual disabilities living in the collectivist Chinese
culture in Hong Kong, a relationship-focused coping
strategy characterized by managing, regulating and preserving relationships during stressful periods (p. 147)
 2012 Blackwell Publishing Ltd

a robust predictor of stress for mothers of boys with

intellectual disabilities. Qualitative analyses indicated
positive and negative maternal experiences related to
self, child, family and community.
Conclusions The high level of stress has important clinical implications. Similarly, the significant role of maternal coping, moderating role of child gender and the
multidimensional caregiving experiences have implications for future research and family interventions in
India.
Keywords: coping, double ABCX, India, intellectual disability, maternal stress, mixed methods

was associated with positive caregiving perceptions

(Mak & Ho 2007). In a study carried out in Lebanon
with mothers of children with intellectual disabilities,
the researchers attributed poor maternal mental health
to factors such as low level of disability-related awareness and the mothers role as the sole childcare provider
in the Lebanese society (Azar & Badr 2006). Despite
these unique cultural patterns evidenced in international
research, only a small proportion of the extant literature
deals with stress and coping among parents of children
with intellectual disabilities in South Asian countries. In
response, the current study examined the patterns and
predictors of psychological stress among mothers of
children with intellectual disabilities in urban India.
The prevalence rate of intellectual disabilities in India
is estimated to be generally high. In an epidemiological
study by the Indian Council of Medical Research,
approximately 1.4% and 0.9% children in 03 and 416
years age group respectively were diagnosed with an
10.1111/j.1468-3148.2011.00672.x

Journal of Applied Research in Intellectual Disabilities 373

intellectual disability (Srinath et al. 2005). The few published studies on families of children with intellectual
disabilities living in India shed some light on the childrelated, parental, and social factors associated with
parental well-being. For example, Padencheri & Russell
(2002) found that childrens challenging behaviours
were negatively associated with parental well-being. In
a different study by Padencheri & Russell (2004), parents of girls with intellectual disabilities reported higher
level of marital conflicts as compared to parents of boys
with intellectual disabilities.
Meanwhile, some other studies highlight the importance of parents own cognitions for their mental health.
The eight mothers in Raos (2006) study acknowledged
their childrens disability, but they emphasized their
normality as well. In particular, the mothers narratives
constructed childrens normality in terms of fulfilling
family duties, participating in family rituals and demonstrating socially appropriate conduct. By labelling their
childrens impairment as an inconvenience rather than
a disability, the mothers tried to promote societal acceptance and inclusion of their children (Rao 2001). According to another study with 31 parents of children with
intellectual disabilities, caregiver burden was higher
among parents who were rated high on expressed emotion, which is conceptualized as parents tendency to
make critical comments or be overprotective. (Datta et al.
2002). Finally, at the social level, formal social support
emerged as an important explanatory factor in two studies. Both studies found that when parents receive formal
support, they are more likely to adapt to their childs
disability (Narayan et al. 1993; Pal et al. 2002).
Albeit informative, these findings fail to elucidate the
extent of stress encountered by mothers of children with
intellectual disabilities in India. They also do not demonstrate specific pathways through which parental cognitions of childs disability and other relevant factors
(e.g. childs functioning) may be linked to parental
stress. Finally, the previously reviewed studies included
parents of children belonging to a broad age group and
derived findings based on parent reports alone. To
address these shortfalls in the literature, the current
study utilized mixed methods and multiple informants
to examine (i) maternal stress levels and (ii) child characteristics and maternal behaviours that might be linked
to maternal stress among families of 3- to 6-year-old
children with intellectual disabilities in India.
The choice of predictors was theoretically guided by
the double ABCX model (McCubbin & Patterson 1983),
a framework that has been effectively utilized by a body
of recent intellectual disabilities scholarship to gain a
 2012 Blackwell Publishing Ltd, 25, 372382

nuanced understanding of maternal stress and adaptation (e.g. Saloviita et al. 2003; Norizan & Shamsuddin
2010). According to the model, parental coping behaviour is a critical factor to link the stressor (e.g. childs
disability or functioning) to the outcome (e.g. parental
stress). Past research has demonstrated across child
diagnostic groups (Down syndrome, autism and Fragile
X) and levels of child functioning that parents who
adopt coping strategies characterized by positively reframing the situation or seeking out social support tend to
report lower stress levels as compared to parents who
deny their childs disability or blame themselves (Abbeduto et al. 2004; Hastings et al. 2005; Glidden et al.
2006; Stoneman & Gavidia-Payne 2006; Dabrowska & Pisula 2010). On the basis of these findings, in the present
study, we included the variables, child adaptive functioning and maternal coping to predict maternal stress.
In addition to generating quantitative information pertaining to factors associated with stress, the study aimed
to identify through qualitative means, the positive and
negative dimensions of parental experiences. This aim is
consistent with the contemporary line of resilience-oriented thinking in the field, which emphasizes the multidimensional nature of parental experiences. Specifically,
the view suggests that although parents of children with
intellectual disabilities report stress, they also derive a
sense of purpose from looking after their child and feel
rewarded when their child shows signs of progress (e.g.
see Hastings & Taunt 2002; for a review; Bostrom et al.
2010). Exploring the positive experiences along with the
stressful aspects of parenting a child with intellectual
disabilities could help to elucidate the unique strengths
of Indian families. In turn, these findings can indicate
ways by which parenting interventions can focus on
struggles encountered by Indian parents and at the
same time draw upon the strengths inherent in the context.
To summarize, the aims of the study were to (i)
gather descriptive information about stress among
mothers of children with intellectual disabilities in
urban India, (ii) identify factors that significantly predict
maternal stress in the Indian context and (iii) generate
qualitative information pertaining to challenges and
strengths encountered by mothers in the sample, in the
context of their childs disability. It was hypothesized
that mothers in a developing country such as India
would report stress levels that are significantly higher
than those reported by mothers of children with intellectual disabilities in developed countries. Second, it was
posited that both child functioning and maternal coping
would be correlated to maternal stress. However, when

374 Journal of Applied Research in Intellectual Disabilities

simultaneously examined, only maternal coping behaviours would significantly predict maternal stress.
Finally, it was expected that mothers caregiving experiences would be characterized by both positive and negative dimensions.

Materials and Methods

teacher had a teaching certification and one was working on a bachelors degree in occupational therapy at
the time of data collection. Teachers experience ranged
from less than a year to 18 years in the field and from
less than a year to 12 years at the current organization.
Their average experience was approximately 5 years in
the field of education and 3 years in their current organization.

Participants
Mothers (N = 47) and teachers (N = 29) of 3- to 6-yearold children participated in the study (19% 3-year-olds,
10% 4-year-olds, 17% 5-year-olds and 54% 6-year-olds).
All children (62% boys) had a diagnosis of intellectual
disabilities either based on a clinical assessment by a
clinical psychologist or based on a functional assessment
by the school counsellor. Whereas for some children
(n = 21), the aetiology was unknown, the remaining children had an associated condition such as Down syndrome (n = 2), autism (n = 9), cerebral palsy (n = 10),
epilepsy (n = 2) and syndrome disorders (n = 3). The
children came from families belonging to middle socioeconomic class, and the mean family income reported
for the participants was approximately 187 000 Indian
rupees (approximately $4000). The education level of the
mothers ranged from elementary education to masters
degree: twenty-nine mothers (62%) in the sample had
lower than high school level education, 13 mothers
(28%) had a bachelors degree and five mothers (10%)
had a masters degree. Majority of the mothers (n = 40)
were homemakers. Fourteen children (30%) lived in
nuclear family households, and the remaining 33 children (70%) lived in a joint family setting with the grandparents and or aunt(s), uncle(s) and cousin(s) in the
house. Forty-four children lived with both biological
parents; one mother was widowed, and two mothers
reported that their spouse had abandoned them on
account of the childs disability.
Teachers (N = 22) across seven research sites participated in the study to report on childrens functioning.
The research site co-ordinator nominated the teachers
who worked most closely with the target child either in
an individual or in a group setting. Four teachers had a
masters degree in either psychology or occupational
therapy, 15 teachers (68%) held a bachelors degree and
three teachers had high school education. Out of the 15
teachers with a bachelors degree, five teachers also had
a diploma in special education and three teachers were
working on an additional degree in special education.
Out of the three teachers who had completed only high
school, one had a diploma in special education, another

Procedure
Following a protocol approved by the university Institutional Review Board, the data collection activities were
carried out at seven research sites located in three midto large-sized Indian cities. Data collection was carried
out at centres that provided early intervention services
to children with intellectual disabilities. As per the protocol, a co-ordinator at each research site sent home
informational flyers to families that met the sample
requirements. On the designated day and time, the
mothers interested in participating in the study came to
their childs school and were provided with more information about the research. They were informed that
their participation was voluntary, and the services they
received from their childs school would be unaffected
whether or not they participated in the study. Consent
was also sought from the mothers to collect information
about their child from their childs teacher therapist.
After mothers provided an informed consent to participate in the study, they completed a short demographic questionnaire and Parenting Stress Index-Short
Form (PSI-SF; Abidin 1995); the measures were translated into two Indian languages (Hindi and Gujarati),
back-translated, and pilot tested.
After completing the surveys, the mothers participated in a semi-structured interview modeled on the
Reaction to Diagnosis Interview (RDI; Marvin & Pianta
1996). The researcher carried out the interviews at each
research site, in a designated space that ensured privacy. The interviews were conducted in either Gujarati,
Hindi or English based on participants preference, and
the time for each interview was limited to 1015 min.
Although by the qualitative research standards, these
interviews may be considered short, it seemed unreasonable to make any additional demands on the participants time, considering the multiple domestic and
professional responsibilities they shoulder.
Upon completion of all data collection activities, the
participants were given 200 Indian rupees (approximately
$5) and a toy for their child. After completing data collection activities with mothers, Vineland Adaptive Behav 2012 Blackwell Publishing Ltd, 25, 372382

Journal of Applied Research in Intellectual Disabilities 375

iour Scales, 2nd edition teacher survey (Vineland II;

Sparrow et al. 2005) was distributed to childrens homeroom teachers at each site. Teachers were informed that
their participation was voluntary, and the information
they provided would be kept confidential. Teachers were
given 200 Indian Rupees (approximately $5) per survey,
and on average, each teacher completed two surveys.

Measures
Child adaptive behaviour
Childrens adaptive functioning was assessed through
teacher reports on the Vineland II. The instrument
assesses childs functioning in four domains: communication, daily living, socialization and motor skills. The
items in each domain are placed in developmental order
and have to be rated on a scale of 02, where 2 is for
behaviour usually or habitually performed, 1 for sometimes or partly performed and 0 for a behaviour never
performed. The overall adaptive behaviour score represents the sum of standard scores from the four domains.
The complete procedure for deriving the standard scores
and information regarding the range of scores representing mild, moderate, severe and profound deficits, can be
found in the Vineland manual (Sparrow et al. 2005).
Adaptive behaviour scores two standard deviations
below the mean score represent significant limitations in
adaptive functioning. In a study with preschoolers in
rehabilitation day-treatment setting, the Vineland Teacher Survey demonstrated sound validity with respect
to Diagnostic Inventory for Screening Children as well
as good reliability with the Vineland Parent Survey
Interview (Voelker et al. 2007). In the present study, the
internal consistency of the overall adaptive behaviour
scale was high (a = 0.90).

Maternal stress
Stress was assessed through mother reports on PSI-SF.
The PSI-SF is made up of 36 items and three subscales
(parental distress, parentchild (pc) dysfunctional interaction and difficult child) with items (e.g. my child
makes more demands on me than most children) that
are rated on a 5-point scale ranging from strongly agree
to strongly disagree. Past studies carried out in a number
of different countries (e.g. China, UK and USA) have
effectively utilized the measure to assess stress among
parents of children with varied aetiological conditions
(autism, Down syndrome) (Tomanik et al. 2004; Hassall
et al. 2005; Mak et al. 2007; Richman et al. 2009). In the
 2012 Blackwell Publishing Ltd, 25, 372382

present study, the three subscales and the overall scale

demonstrated good internal consistencies with alphas
ranging from 0.75 to 0.89. Only the overall stress score
was used in the present analysis.

Maternal coping
Mothers participated in a semi-structured interview
modeled on the Reaction to Diagnosis Interview (RDI;
Marvin & Pianta 1996). RDI is a structured interview
consisting of questions to examine parents initial reaction to their childs diagnosis and changes over time, in
parental cognitions regarding their childs disability. To
the extent possible, the wording and sequence of the
questions were maintained, but some questions were
rephrased to make them relevant to the participants. For
example, the question, When did you first realize that
your child had a medical problem? was rephrased to
include childs name and aetiology. If participants
sought clarifications, the questions were further
rephrased, and follow-up questions were asked to clarify participants responses.
Whereas RDI has been used in the previous studies
(e.g. Marvin & Pianta 1996; Rentinck et al. 2009; Schuengel et al. 2009) to classify parents into two categories
resolved to childs diagnosis and unresolved to childs
diagnosis in the present analyses, the audiotaped interview responses were used to rate maternal coping on a
5-point scale. In line with Lazarus & Folkmans (1984)
definition, maternal coping was conceptualized as strategies that mothers utilized to manage the stressors
related to their childs disability. On the basis of past
evidence on caregiver stress and coping among families
of children with disabilities (e.g. Glidden et al. 2006),
maternal responses that suggested constructive helpseeking and positive reframing of the situation were
given a rating of 5 (for example see excerpt 1). Lower
ratings were given when mothers reported wanting to
escape or wish away the stressor(s) (see excerpt 2).
To assign a rating, the coder played the entire interview and made running notes to document the coping
strategies. After listening to the entire interview, the
coder referred to the notes to make a judgement about
the rating. Sometimes, before making a final rating decision, the coder replayed parts of the interview to get a
better understanding of participants coping strategies.
Although the entire interview was played before assigning a rating, maternal coping patterns were most evident from participants responses to questions
pertaining to their feelings at the time of diagnosis and
changes in those feelings over time. Two illustrative

376 Journal of Applied Research in Intellectual Disabilities

interview excerpts (translated from Hindi) are presented

below. The first excerpt is taken from an interview that
indicated positive coping, whereas the second excerpt
reflects an avoidant coping pattern.
Excerpt 1
When I found out, I felt like I just wanted to cry all
the timefelt very distressedwondered what
would happenwhat would happen in the future.
But gradually I felt it is OKwhatever is to be
done, we only have to do it and have to help him
achieve his full potential. Whatever we can dohe
has to bebe the best he can. So I started physiotherapy. There they told me about this school. And
he has been coming here for 3 years.I gave up
my job to attend to his needsat first I was
shocked. I used to feel I cannot do anything. What
will I do? But now I have so much courage inside
me that I feel I can do anything. I have done so
much in the past five yearsand that has led to so
many improvements in him.
Excerpt 2
At that time I was in a very bad shape. It was extremely hard for me to recover from that shock. I had
no idea that there can be such a child. I have seen the
best doctors in Delhi but nobody is able help me.
Now I am trying to come to terms but it is extremely
hard. If they would have told me, given me some
indicationmy sister also had mental retardationso because of that I had asked the doctors
repeatedly that if you have the slightest suspicion,
abort the child (begins sobbing). After seven years I
had this child. I am trying to do things, but it is very
difficult for me. But there is no other option.
The principal coder (author) coded all the interviews,
and an undergraduate student from India, who was
well conversant with Hindi, coded 20 interviews (43%)
for reliability. Before the secondary coder started coding,
the principal coder went over the definition of coping
and provided illustrations of coping from the recorded
interviews. Next, the principal coder explained with
examples, what each anchor point or rating on the scale
represented. The secondary coder coded two interviews
for practice, but before making the final rating decision,
the principal coder and the secondary coder went over
the latters notes, identified the responses that could
support the rating decision and then decided the rating.
This exercise helped the secondary coder understand

the rating process. Subsequently, the secondary coder

coded four interviews, and the secondary coders ratings
were compared with the principal coders ratings. On
finding good inter-rater reliability, the secondary coder
completed 16 additional interviews. Overall, 20 interviews were double-coded with a reliability rate of 92%.

Parental experiences
Utilizing the open and axial coding procedures (Patton
2002) delineated under Strauss & Corbins (1990)
grounded theory approach, the interview responses
were analysed to generate qualitative themes pertaining
to negative and positive caregiving experiences. Each
audio taped interview was played 23 times, and
unique themes were recorded on an easel pad. After
open coding 30 interviews, the themes were examined
and grouped to create a tentative list of final themes.
Approximately 25 and 32 unique themes for positive
and negative caregiving experiences, respectively, were
classified into three main themes: (i) self and child, (b)
family and (c) community. The remaining interviews
were coded to critically examine and expand the list of
themes and subthemes.

Results
The average adaptive composite score for children based
on teacher reports was 45 and fell in the moderate deficits range (Sparrow et al. 2005). According to the ranges
specified in the Vineland II manual (Sparrow et al.
2005), 15 (32%) children were in the severe deficits
group, 21 (45%) children had moderate deficits in adaptive functioning and 11 (23%) had mild deficits in adaptive functioning. The average rating of maternal coping
was 2.96 (SD = 1.26) on a 5-point scale. Ratings indicated that 27% mothers used maladaptive strategies to
cope with their childs disability, whereas 37% mothers
utilized positive coping techniques to deal with their
childs disability; remaining mothers had a median rating.
The mean maternal stress score (M = 104.69,
SD = 22.54) from the current study can be considered
high, and according to the levels defined in the manual,
77% (n = 36) had clinically significant scores (RS > 90).
Furthermore, the first study hypothesis regarding higher
stress among Indian mothers as compared to mothers of
children with intellectual disabilities in developed
nations was tested through t-test comparisons between
PSI-SF scores from the current study and PSI-SF scores
from studies with mothers of children with intellectual
 2012 Blackwell Publishing Ltd, 25, 372382

Journal of Applied Research in Intellectual Disabilities 377

disabilities in developed countries. The results of the ttests indicated that the mean maternal PSI-SF score from
the present study (M = 104.69, SD = 22.54) was significantly higher than PSI-SF scores from studies carried
out with mothers of children with autism in Canada
(M = 95.9, SD = 17.2, t = 2.80, P = 0.006) (Zaidman-Zait
et al. 2010), mothers of children with intellectual disabilities in the United Kingdom (M = 95.4, SD = 20.3,
t = 2.09, P = 0.04) (Hassall et al. 2005) and mothers of
children with Down syndrome in the United States
(M = 68.5, SD = 29.3, t = 5.71, P = 0.0001) (Richman et al.
2009).
Correlational analyses (see Table 1) examining associations between child characteristics (age, gender and
adaptive functioning), maternal coping and maternal
stress yielded significant correlations between all variable pairs with two exceptions; child gender was not
significantly correlated to adaptive functioning and
maternal coping. The t-test findings were consistent;
girls and boys did not differ significantly on teacherreported adaptive functioning, and mothers of girls and
boys did not differ significantly from each other on coping assessed through maternal interview responses.
However, as compared to boys mothers (M = 98.80;
SD = 23.51), girls mothers (M = 114.50; SD = 17.28)
reported a significantly higher level of stress;
t(45) = )2.46, P = 0.01.
The regression analysis was conducted by regressing
the outcome (maternal stress) on the two predictors
child adaptive functioning and maternal coping after
controlling for childs age and gender. Consistent with
Table 1 Child demographic variables, child adaptive
behaviour, maternal coping and maternal stress: correlations
and descriptive statistics (N = 47)
Variables

1. Child age

)0.05

2. Child gender1
3. Child adaptive
)0.33* )0.10

behaviour (T)
4. Maternal coping (I) )0.39**
0.03
0.38*

5. Maternal stress (M)

0.35*
0.34* )0.35* )0.48**

M
5.10

45.91
2.96
104.69
SD
1.20

14.99
1.26
22.54
Range
36.6

2088
15
a

0.90

0.89
1
Child gender: 0 = male, 1 = female.
T, Teacher reports on Vineland II; I, Interview with mothers; M,
Mother reports on PSI-SF.
*P < 0.05, **P < 0.01, ***P < 0.001.

 2012 Blackwell Publishing Ltd, 25, 372382

the hypothesis, out of the two predictors, only maternal

coping significantly predicted maternal stress. As gender
had a significant effect on maternal stress, the link
between maternal coping and stress was examined separately for mothers of girls and boys. This analysis
yielded different findings for the two groups (see
Table 2); whereas maternal coping significantly predicted stress among mothers of boys, findings were
non-significant for mothers of girls (Table 2).
A thematic analysis of interview responses supported
the notion of multidimensional caregiving experiences.
As summarized in Table 3, parental responses suggested
nine subthemes for positive and 12 subthemes for negative maternal experiences distributed across three
higher-order themes: (i) self and child level, (ii) the family level and (iii) the community level (Table 3).

Discussion
This is one of the first studies to derive findings pertaining to the stress profile of mothers of young children
with intellectual disabilities living in urban India. The
findings not only indicate a high level of maternal stress
with three-fourths of the mothers at clinically significant level but as hypothesized, the average stress score
from the current study was significantly higher than
maternal stress scores from studies carried out with
families of children with intellectual disabilities in other
countries. Moreover, mothers of girls reported significantly higher stress as compared to mothers of boys.
The study findings indicate also that maternal coping
strategies rather than childrens adaptive functioning
account for the variation in maternal stress levels. This
link confirms past findings about the role of positive
parental coping strategies (e.g. Hastings et al. 2005; Dabrowska & Pisula 2010), while extending the findings to a
new cultural context. It is noteworthy, though, that positive maternal coping behaviour was associated with
lower stress only among mothers of boys.
The variations in parental stress based on childs gender are consistent with Padencheri & Russells (2004)
finding from an Indian study, in which parents of girls
with intellectual disabilities reported higher marital conflict as compared to parents of boys. Notably, such gender differences have not been detected or reported from
previous studies with parents of children with intellectual disabilities in other countries. In the present study,
the possibility of statistical error on account of the small
sample size cannot be discounted. However, an alternate
explanation for the gender difference may be the patriarchal structure of the Indian society (Johri 2010).

378 Journal of Applied Research in Intellectual Disabilities

Table 2 Summary of simple regression analyses for variables predicting maternal stress (N = 47)
Girls

Boys

Overall sample

Variable

SE B

SE B

SE B

1. Child age
2. Child gender
3. Child adaptive behaviour (T)
4. Maternal coping (I)
R2
F

1.85

0.11
)4.12
0.11
0.50

3.86

0.32
4.94

0.14

0.10
)0.25

4.58

)0.25
)7.58
0.48
7.50**

3.50

0.29
2.81

0.23

)0.16
)0.46**

3.53
18.53
)0.15
)7.07
0.43
7.65***

2.48
5.78
0.21
2.41

0.19
0.39**
)0.10
)0.40**

T, Teacher reports on Vineland II; I, Interview with mothers.

*P < 0.05, **P < 0.01, ***P < 0.001.

Table 3 Positive and negative caregiving experiences among parents of children with intellectual disabilities in India
Related to

Positive experiences

Negative experiences

Self and child

Personal growth (increased competence, courage and

ability to make a difference)
Sense of purpose (feeling of personal
accomplishment and gratification when child made
improvements, hugged and smiled)
Child is special and a gift of God (either the childs
pleasant disposition, diligence, or lifelong reliance
on caregiver made the mother perceive the child as
a blessing)
It could have been worse (A sense of gratitude that
their childs disability is less severe as compared to
the disabilities that some other children live with)
Special bond shared by child with extended family
Empathy and sense of responsibility that siblings
had developed because of childs disability
Increased paternal support and involvement because
of childs special needs
Social and family support

Negative and ambivalent feelings (regret and guilt

over not terminating the pregnancy)
Blaming childs disability on own or childs karma
Career-related changes (forced to take up multiple
jobs or give up a demanding career to take care of
the child)
Social isolation out of embarrassment
Daily hassles because of childs special needs, lack of
independence or conduct problems.
Childs inability to engage in meaningful play

Family

Community

A sense of community with other parents and

professionals

According to some estimates (Office of the Registrar

General and Census Commissioner of India 2001; Asian
Development Bank report 2002) as compared to boys,
girls with disabilities have less access to therapeutic
resources and are more likely to be victims of abuse (as

Reaction of father and extended family (rejection,

denial or minimization of childs condition)
Extended familys tendency to compare child to
cousins with typical development
Decision about having a second child (either decided
against having a second child or delayed it until
the child achieved self-reliance)
Financial burden (cost of therapy, medication,
doctors school)
Lack of definitive diagnosis by doctors
Societal valorisation of mothers role (made to feel
that as mothers they should make sacrifices for the
childs good and as mothers they can make a real
difference).

cited in Kalyanpur 2008). Perhaps these contextual risks

exacerbate the stress among mothers of girls with intellectual disabilities. Future studies should carefully
examine how the contextual factors in India put mothers
of girls with intellectual disabilities at an additional risk
 2012 Blackwell Publishing Ltd, 25, 372382

Journal of Applied Research in Intellectual Disabilities 379

of poor mental health. The same societal factors might

also undermine the benefits of positive maternal coping
and thereby explain the non-significant link between
positive maternal coping and maternal stress among
mothers of girls in the present study. In other words,
for these mothers, the societal bias against girls perhaps
renders personal coping strategies (e.g. social support
and reframing of the situation) ineffective. If future evidence confirms these trends, advocacy efforts towards a
systemic, societal change in attitudes towards girls
rather than just personal change and adaptation might
be more effective in improving the well-being of these
mothers.
The qualitative themes corroborate previous findings
and at the same time suggest some patterns that might
be unique to Indian families. Because of space constraints, only a few themes are discussed here. At the
micro-level (self and child), the positive dimensions (i) a
sense of purpose and (ii) personal growth or transformation, and negative dimensions (i) sense of isolation and
(ii) daily hassles, have been noted in a number of previous studies (e.g. Chang & McConkey 2008; Kayfitz et al.
2010).
Furthermore, two themes viewing the child as a
blessing and blaming ones own or the childs karma
had a religious nuance. Religion has been examined to
some extent with respect to parental adaptation in previous studies. Whereas in some studies such religious
coping has been linked to positive adaptation (e.g. Norizan & Shamsuddin 2010), other studies have noted less
optimal family outcomes stemming from religious coping strategies (Hastings et al. 2005). Tarakeshwar &
Pargament (2001), however, differentiated between positive and negative religious coping methods and found
that the participants who utilized positive religious coping methods reported growth in personal and social
domains. In contrast, participants who utilized negative
religious coping strategies were rated higher on depression. Similarly, the themes from the present study suggest that when religion is used to positively reframe the
childs disability (e.g. blessing), it may be adaptive, but
when it contributes to fatalistic or self-destructive beliefs
(e.g. karma or punishment for past sins), it perhaps
becomes maladaptive. Future studies can examine specifically how religious coping and maternal stress are
associated among Hindu mothers (Hinduism is a major
religion in India; 87% of study participants were Hindus) in India.
In addition, a number of themes have important
implications for facilitating maternal adaptation. For
example, several participants reported that they were
 2012 Blackwell Publishing Ltd, 25, 372382

devastated when they first found out about their childs

disability, but when they saw other children with worse
problems, it made them feel better about their own situation. Thus, including information about various aetiological conditions in intervention programmes could
help parents put their own problems in perspective and
thereby adapt to childs disability. A related theme at
the community level is the support network mothers
developed with other parents, schools and professionals.
Given the scarce resources in India, structured efforts
towards developing parent support groups for parents
of young children could be a viable and cost-effective
method to alleviate maternal stress.
Finally, family-level negative (lack of acceptance) and
positive (source of support) themes reflect the salience
of extended family for Indian mothers. This finding is
important and warrants more research on how the negative and positive themes are linked to maternal mental
health. Hastings et al. (2002) noted from their study on
grandparental support and conflict that whereas support
was negatively linked to stress, conflict was associated
with maternal pessimism. However, Pal et al. (2005)
derived a somewhat contradictory finding; in their
study with families of children with epilepsy in rural
India, maternal reports of family support were positively linked to childrens behavioural problems. On the
basis of evidence from other studies, childrens behavioural problems share a strong association with high
maternal stress (e.g. Baker et al. 2002; Beck et al. 2004).
Pal et al. hypothesize that the inability of the extended
family to provide quality care or their outdated notions
of caregiving may account for this counterintuitive link.
Given that extended family lives in close proximity and
sometimes in the same household in India, it is important for future research to delve deeper into its effects
on maternal well-being.
The above findings are preliminary and need to be
viewed in the context of some limitations. First, the findings are based on a relatively small sample size that might
have somewhat inflated the effects. Second, because of
the cross-sectional research design, no causal assumptions can be made about the associations among child
functioning, maternal coping and maternal stress. Longitudinal design would not only clarify direction of the
effects but also enable examination of a mediation model,
with parental coping as a mechanism explaining the
effects of child functioning on parental stress. Supportive
evidence would enhance the applicability of double
ABCX model to families of children with intellectual disabilities as well as add to the literature on stress and coping among these families. The third limitation pertains to

380 Journal of Applied Research in Intellectual Disabilities

a potential selection bias; families that agreed to participate in the current study perhaps differ significantly on
the assessed variables from the families that did not
respond to the request to participate. A related limitation
is that although the sample was diverse, it represents only
the families that access educational services for their children. According to some estimates, in India, <5% of individuals with disabilities ever attend a school
(Mukhopadhyay & Mani 2002; National Council of Educational Research and Training 2005). It is possible that
the stress profile of families that access educational services is different from those that do not. Future studies
can perhaps include families being served through community-based rehabilitation services, which have a much
wider reach (Sen & Goldbart 2005; Dalal 2006).
Further, inclusion of children from different disability
groups (autism, Down syndrome, cerebral palsy) in the
sample precluded conclusions regarding links between
specific aetiologies and maternal stress. Research in the
United States suggests that compared with other disability groups, mothers of children with autism are at greatest risk for poor mental health (Eisenhower et al. 2005).
In contrast, parents of children with Down syndrome
enjoy the Down syndrome advantage or positive socioemotional well-being stemming perhaps from their childrens easy disposition (see Hodapp 2007; for a review).
Future research in India with specific disability groups
can verify whether these aetiology-specific parental experiences apply to the Indian context. Finally, from the
qualitative research perspective, the interviews in the
present study can be considered rather short and structured. The structure of the interview and its focus on
childs diagnosis may have deprived the mothers of the
opportunity to talk about what is truly significant to
them with regard to their childs disability. It is possible
that the childs diagnosis is not as salient for mothers in
India as it is for parents in the Western countries. However, the diversity of themes suggests that despite this
methodological limitation, insightful information was
garnered, and future research can use these themes to
guide a more in-depth qualitative exploration of parental
experiences in India. Despite limitations, the study makes
an important contribution to extant literature. The use of
multiple informants (mothers and teachers) and multiple
methods (surveys and interview) greatly enhanced the
validity of the findings (i.e. findings are not attributed to
shared method variance). The study findings also provide preliminary validation for the maternal-coping rating system developed and utilized for coding maternal
interviews. In addition, the qualitative findings are rich
and can be used to construct a more comprehensive and

culturally valid tool to assess maternal stress in India. A

significant strength of the study also lies in the age group
of the children included in the sample. In general, diagnosis of disability and help-seeking happen at a much
later age in developing countries as compared to the
same in developed nations (e.g. Daley 2004; Wilcox et al.
2007). This makes it extremely challenging to recruit families of very young children with intellectual disabilities.
This is one of the few studies carried out in a developing
nation and perhaps the first in India that examines
maternal stress and coping in this specific age group. The
information derived from the present study regarding
the maternal stress profile can be utilized to advocate for
mental health services for mothers of young children
with intellectual disabilities in India. To be effective,
these services can focus specifically on enhancing mothers coping resources. Given that early intervention services have significant benefits for the developmental
outcomes of children with disabilities (see Guralnick
2005 for a review; Shin et al. 2009), research with parents
of children in this age group is critical for planning effective interventions.

Correspondence
Any correspondence should be directed to Aesha John,
Department of History, Philosophy, and Social Sciences,
Pittsburg State University, 1701 S. Broadway., 323 Russ
Hall, Pittsburg, KS 66762, USA (e-mail: ajohn@pittstate.edu).

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